Recent content by anne

My mom too had a peg tube. She kept it very clean at all times however she too would develop granulations to one side of the peg. It would start like a blister, get very red and then it would burst, heal and then start all over again. We had gone to a dematologist and he had told us to use...

My mother was diagnosed with bulbar als June 2006. Prior to her being diagnosed the doctor's were telling her that her problems were from acid reflux. Maybe there is some connection. Anne

Sam...I think you mean a feeding tube ...not bipap Anne

Holly...I am so sorry for the loss of your dear mother. She is now FREE from this terrible disease. May she rest in peace. God Bless,

Thanks everyone....I actually got a box and cut out the bottom and got her to use that lastnight and it worked well.....thanks again. Anne

Hi Cindy...thanks for the website....they certainly have lots of products. I have looked and looked, would you happen to know what it is called or in what section I would be able to find it. Thanks, Anne

Thanks for the suggestions. She does have an adjustable bed but the covers still seem to be a problem. Anne

Hi Kepi...I am very sorry to hear about the loss of your beautiful mom. I too lost my mom from bulbar als Sept 07. You described your mom just the way I would described my mom. My mom also passed away hours after her priest had come in. Actually when he arrived my mom was in a state of an...

Hi everyone...I have not been posting for some time now.Some of you might remember me, my mom passed away September 07 with bulbar after a 15 month battle. I am back on the forum and looking for advise on how to help my sister in law who has been battling ALS for the past 8 years. Her symptoms...

Holly....my mom suffered with the phlegm problem. The ALS clinic had suggested she use Accent meat tenderizer under the tongue or on the tongue and it would cut the phelgm. It worked to a certain degree for my mom. She would put some on a little plate and then drop a few drops of water to make a...

Al, Cindy and David....you guys are absolutely fabulous in keeping this forum running so smoothly. The forum gave me alot of helpful information. I found great comfort and I got much support from everyone from the time my mother was diagnosed until the day she passed away. It will be 9 months...

Steve...I am so sorry to hear about the loss of your dear mother. The loss of a loved one is so difficult....more so, I think, when it is your mom. I too lost my mom this past September and my life has been completely unbearable. I feel like a part of me is gone. The only thing that gets me...

Hi Wendy....I am sorry about all the heart ache that you have experienced. Losing a loved one so suddenly must just be awful. My mother passed away 5 1/2 months ago from bulbar als and the only good thing about this disease was that I had 15 months from the time of diagnosis to spend every spare...

Do you mean the diaphragm pace maker device, if so (Holly) Hopealive's mother has bulbar als and has been on a waiting list to have this inserted. Her condition appears to be rather slower than the normal. You can always message Holly and get her input on it. I have not been in touch with Holly...

My mom had bulbar...She started off with having hoarseness in her voice. The pitch of her voice changed, she developed a slight drool. She started to have difficulty swallowing. At first she would say that the food would get stuck and she really had to swallow hard to get it down. She then...